If my Migraine disease has taught me anything - and continues to teach me anything - it's the value of slowing down.
We talk about slowing down all the time when we discuss chronic illness. Being chronically ill requires us to reserve our energy for those things that really matter, to evaluate what we can and cannot do based on how our bodies feel. While initially upon being diagnosed we can fool ourselves into thinking we can still operate our lives at "normal" speed (whatever that means), eventually our bodies demand us to make some hard decisions.
On an even more basic level than that, time slows down with pain. My Migraines and IIH together mean I'm in constant pain. Coping with that pain can slow down time - can you remember a time when a painful injury made it feel like an eternity until that pain was relieved? Chronic pain has a funny way of altering one's perception of time.
Slowing down also takes shape in the way we carefully consider choices where others might make snap decisions. Should I go out tonight, or stay in? If I get off the couch, will my symptoms feel better or worse? What is the best thing for me to eat tonight, based on how I'm feeling? If I take a shower in the morning, will that make it more difficult to get through a full day of work? Should I shower at night instead? How can I dress myself to go out so I'm comfortable but still feel stylish? Stopping to consider every little incidental action slows us down.
Since yesterday was Saturday, that meant a weekly trip to one of our local farmers' markets. DF and I buy the vast majority of our food directly from farmers. (There's quite a large backstory here, which I plan to post about in the future. The short version of our reasoning is that it's the cheapest way to get the quality of food I need to eat to help manage my multiple illnesses.) The seasonal market we used to go to ended at the beginning of October, so we're now going to a year-round one; since DF was working on Saturdays I got to go myself. Which was a nice change from our usual habits.
Yesterday I wasn't feeling very well because of some stormy weather that had passed through the night before. My body soon told me to slow down, a not-so-gentle reminder that even when I think I'm taking it slow, my body has ideas of its own. So I found myself in one of the farmers' stalls, surrounded by fresh produce, deeply breathing in the wonderful smells of earthy, spicy fall vegetables. Mmmm. And I found myself smiling despite how crappy I felt.
When illness and pain try to steal everything from my life - friends, family, health, happiness, fun - I find myself eventually refocusing on those things that are most important to me, and those simple things that bring me joy. In a world complicated by medications, symptoms, doctors, hospitals, treatments and bills, it is incredibly refreshing to enjoy the simple beauty of the first winter squash of the season. That joy doesn't make the pain and illness go away, but it does give me a way to step outside myself, even if just for a minute. And it gives me a moment of slowing down.
Be well,
MJ
Showing posts with label Idiopathic Intracranial Hypertension. Show all posts
Showing posts with label Idiopathic Intracranial Hypertension. Show all posts
Sunday, November 1, 2009
Friday, October 9, 2009
learning to ask for help
DF and I recently went on vacation to Charleston SC for a week, which marked the official start of our wedding planning. We had a great trip. The first half we spent with my mom and sister; after they left, we had three days to ourselves to play tourist. I actually felt fairly good during vacation. I still had the daily head pain from my Migraines and IIH, but I paced myself and practiced good self-care, and was able to enjoy our vacation - even if a lot of it was spent in the condo we stayed at.
When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.
Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.
It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.
This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.
I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.
In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.
But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.
Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.
It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.
I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.
Be well,
MJ
When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.
Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.
It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.
This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.
I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.
In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.
But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.
Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.
It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.
I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.
Be well,
MJ
Saturday, September 12, 2009
30 things about my invisible illness you may not know
The wonderful Teri Robert of MyMigraineConnection had recently posted this on her blog, From Teri's Keyboard, and asked me to participate.
I'll quote Teri's post here to better explain this meme:
Without further ado...
1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.
2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).
3. But I had symptoms since: at least my early teen years.
4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.
5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.
6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.
7. My favorite medical TV show is: House and Royal Pains.
8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.
9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.
10. Each day I take 19 pills & vitamins.
11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.
12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.
13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.
14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.
15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.
16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.
17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.
18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.
19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.
20. A new hobby I have taken up since my diagnosis is: knitting/crochet.
21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.
22. My illness has taught me: to say no.
23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.
24. But I love it when people: show compassion or honestly want to know more about my illnesses.
25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.
26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.
27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.
29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.
30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.
If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.
Be well,
MJ
I'll quote Teri's post here to better explain this meme:
Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.
Invisible illnesses are easy for "healthy" people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.
Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know.
Without further ado...
1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.
2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).
3. But I had symptoms since: at least my early teen years.
4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.
5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.
6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.
7. My favorite medical TV show is: House and Royal Pains.
8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.
9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.
10. Each day I take 19 pills & vitamins.
11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.
12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.
13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.
14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.
15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.
16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.
17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.
18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.
19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.
20. A new hobby I have taken up since my diagnosis is: knitting/crochet.
21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.
22. My illness has taught me: to say no.
23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.
24. But I love it when people: show compassion or honestly want to know more about my illnesses.
25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.
26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.
27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.
29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.
30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.
If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.
Be well,
MJ
Monday, August 10, 2009
radio silence | part 1: another acronym, another diagnosis
Well, hello there, everyone. I'm hoping to get back into more regular updates, and in the meantime, I hope to catch you up a bit on what's been happening in my corner of the world.
When I saw Dr E in February, he prescribed a low dose of Celexa (citalopram) to help with the anxiety and depression I was dealing with because of life stressors (namely, unemployment) and my health. Celexa is also used as a Migraine preventive, so we were hoping it would help in the head pain arena, as well. I spent a few weeks trying to gather my courage enough to swallow that first pill, and in the meantime, found a part-time job, so I never did try it.
During my follow-up visit with Dr E in April, he asked me where I wanted to go with my treatment. I had seen some success with Dr P, and obviously I was feeling skittish about trying new prescription drugs. So I brought up an issue that had been simmering in the back of my mind for over a year - are my vague symptoms actually due to Idiopathic Intracranial Hypertension? I certainly have at least mild head pain every day, with dizziness; as well as unexplained Migraine attacks, nausea, shoulder and neck pain, and tinnitus. Dr E and I had discussed this when I first saw him in 2008, and we had decided to try a few other treatment ideas first before further exploring IIH.
When I brought up IIH again, Dr E agreed that we had come to a point in my treatment where it made sense to test for it. He scheduled me for a lumbar puncture at the end of April. The procedure itself was fairly straightforward (though massively anxiety-producing) and I found out that my pressure is higher than normal. I ended up with a truly terrible spinal headache after the LP that left me completely bed-bound for a week, but I was able to get a blood patch to treat the headache.
While I'm certainly not happy to have another thing wrong with me, getting diagnosed with IIH has opened up my treatment options. Dr E prescribed me a very low dose of Diamox (acetazolamide) to reduce my spinal fluid pressure. I've been taking it since May, and just increased my dose a month ago, and I'm already seeing some positive effects. I'm tolerating it better than the other prescription preventives I've tried, so all in all, the LP was worth it.
I still have a long way to go in finding an effective treatment regimen, but adding the Diamox to treat my IIH has been an important step. I'm having less overall head pain, fewer Migraines and less severe Migraines. Every little bit helps, so I'm glad I followed my instincts and discussed IIH with Dr E.
More to come...
Be well,
MJ
When I saw Dr E in February, he prescribed a low dose of Celexa (citalopram) to help with the anxiety and depression I was dealing with because of life stressors (namely, unemployment) and my health. Celexa is also used as a Migraine preventive, so we were hoping it would help in the head pain arena, as well. I spent a few weeks trying to gather my courage enough to swallow that first pill, and in the meantime, found a part-time job, so I never did try it.
During my follow-up visit with Dr E in April, he asked me where I wanted to go with my treatment. I had seen some success with Dr P, and obviously I was feeling skittish about trying new prescription drugs. So I brought up an issue that had been simmering in the back of my mind for over a year - are my vague symptoms actually due to Idiopathic Intracranial Hypertension? I certainly have at least mild head pain every day, with dizziness; as well as unexplained Migraine attacks, nausea, shoulder and neck pain, and tinnitus. Dr E and I had discussed this when I first saw him in 2008, and we had decided to try a few other treatment ideas first before further exploring IIH.
When I brought up IIH again, Dr E agreed that we had come to a point in my treatment where it made sense to test for it. He scheduled me for a lumbar puncture at the end of April. The procedure itself was fairly straightforward (though massively anxiety-producing) and I found out that my pressure is higher than normal. I ended up with a truly terrible spinal headache after the LP that left me completely bed-bound for a week, but I was able to get a blood patch to treat the headache.
While I'm certainly not happy to have another thing wrong with me, getting diagnosed with IIH has opened up my treatment options. Dr E prescribed me a very low dose of Diamox (acetazolamide) to reduce my spinal fluid pressure. I've been taking it since May, and just increased my dose a month ago, and I'm already seeing some positive effects. I'm tolerating it better than the other prescription preventives I've tried, so all in all, the LP was worth it.
I still have a long way to go in finding an effective treatment regimen, but adding the Diamox to treat my IIH has been an important step. I'm having less overall head pain, fewer Migraines and less severe Migraines. Every little bit helps, so I'm glad I followed my instincts and discussed IIH with Dr E.
More to come...
Be well,
MJ
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